A Caller From St. Sault Marie

One of the nicest perks from writing my book has been receiving emails and calls from readers.

They are thanking me for writing Not Exactly As Planned: A Memoir of Adoption, Secrets and Abiding Love.  They relate to my stories about the ins and outs of adoption. They relate to the challenges (and joys!) of raising our son with Fetal Alcohol Spectrum Disorder.  They thank me for me honest about the  ups and downs many of us face.


People share their own stories with me. And mostly, they thank me for making them feel less alone in their struggles.

A great response to my book came in yesterday.  I received a call from a woman who lives in a small northern Ontario town. She had heard about my book on the CBC, and ordered it from an online bookstore (Chapters/Indigo).

Karen also thanked me for writing the book. Though her life is very different from mine, she has raised two children, a boy and a girl with FASD, now adults in their 20s. Karen has had her share of hardships. Her children are older, like mine, and her life is still very tied up with caring for them.  She realizes it may always be so.

Her marriage split up, as many do due to the stress of raising difficult children. But Karen has friends to support her and a strong will.  She's a survivor. 

At the end of our conversation, Karen said, "When I save up enough money, I'd like to buy 10 copies of your book to give away. I want to give one copy to the Children's Aid Society here. Another to the guidance counselors where my children went to school. Another for the local library and community centre. Another for the Native council office..."  I was greatly touched by her desire to spread the word about FASD and the struggles families like ours experience raising our children with the disorder.

Her comment about giving out copies of my book have been on my mind since she and I spoke. I kept wondering whether I should have offered to send her copies.

I received a call from her again this morning. "Just wanted to let you know that I ordered 10 copies of your book. Decided i really wanted to do it."

I let her know how generous I thought she was, and how thrilled I was that she would be passing my book on to people who would clearly learn a lot from it. What a kind gesture.

The next time I wonder whether or not I was crazy to bare my soul the way I did in the book,  I will think about Karen't phone call. I have no doubt it will banish all such thoughts.

At least momentarily.

Not Exactly As Planned  is available on Amazon

My Memoir, Not Exactly As Planned, fall 2014 release

                              Not Exactly as Planned
                              A Memoir of Adoption Secrets and Abiding Love

                                         Book launch in Toronto
                                 November 18, 6:00 - 8:00  p.m.
                                         Ben McNally Books

 
My life took a major turn when our son, adopted at birth, is diagnosed with irreversible brain damage from fetal alcohol syndrome. I am determined to change Michael’s prognosis and live with as much joy as possible while struggling to accept my new reality.

Not Exactly as Planned is more than a story of motherlove. It’s about birdwatching, bar mitzvahs, the collision of '60’s ideals with the real world, family secrets and woodcarving.

The book, published by Demeter Press will be available October, 2014. 
 
                                                 order here

Why I wrote the book:

Fetal Alcohol Spectrum Disorder affects an estimated one percent of all children born in North America. Yet, despite being the most common cause of developmental disability, most members of the public are unaware of it and of the ways it profoundly affects the lives of individuals and their families.

It is my hope that the book will bring comfort and hope to families struggling to raise children with FASD, and bring to professionals who work with these families a better understanding of the daily struggles these families live with.


Synopsis of the book:

Not Exactly As Planned chronicles Linda Rosenbaum’s arrival in Toronto in 1970 from the US after political upheaval and sexual violence in Washington, D.C. casts her on an unexpected journey north in search of safe haven. She lives a counterculture life in communes in Toronto’s American ex-pat community, eventually moving into the city’s mainstream. A move to Toronto Island, marriage, and parenthood through two unorthodox adoption processes finally bring a sense of safety and belonging.

Life takes a major turn when Linda’s son, adopted-at-birth, is diagnosed with irreversible brain damage from fetal alcohol syndrome when he is six. She was determined to change Michael’s prognosis, illustrating the expectations that those raised on the activism of the 1960s brought to their lives and families. She no longer fights for other people’s sons — picketing for civil rights or demonstrating to bring soldiers home from Vietnam. She has to fight for her own son.

According to statistics at the time, fetal alcohol syndrome (FAS) was a sentence to failure in his life: he'd drop out of school; he'd be incapable of holding a job; he'd live on welfare, on the street or worse. The brain damage, they said, was irreversible.

With love, devotion, hope and all the medical knowledge she could accumulate, Rosenbaum sets out to change the predicted course of events. Though truth of the old Yiddish saying “Man plans, God laughs”  was testing her, she is determined to have the last laugh. She confronts the sexual violence in her youth; raises her children Jewish even as they share their father’s last name of Christmas; fights to save the iconoclastic Toronto Island community from developers’ bulldozers; and resolves to live with as much joy as she can while struggling to beat Michael's odds.

With compassion and humour, Not Exactly As Planned weaves the disparate threads of Rosenbaum's life into a story of acceptance, at once achingly unique yet universal to all parents.  Not Exactly As Planned  is a provocative story about hope, loss and acceptance. 

Mama Getaways

All mums, by and large, deserve breaks from mothering. No denying that aspects of the job description are rewarding. But for many of us – particularly ones like me who have children with disabilities – the job can sometimes take the living daylights out of us. When the signs are clear that we’re coming to our proverbial Wit’s End, it’s time to recharge. For everybody’s sake. As the saying goes, “If Mama ain’t happy...NOBODY’s happy.”

In my memoir Not Exactly As Planned, to be published in November by Demeter Press, I describe the strains on my marriage from raising our son with fetal alcohol syndrome. I’ll gently sum them up here with the following understatement:“The cups of tea he used to bring me in bed each morning during the first years of our marriage stopped coming.”

However, Robin and I were fortunate enough to have the resources to get away from time to time.

From the book:  “When Robin and I travelled, our problems seemed to vanish as soon as we hit the road. Travel was the key to remembering what it was we loved about being together. It was a magical elixir to our troubled marriage.

Undoubtedly, one of our trips’ positive attributes was the pact we made before we left: we wouldn’t talk about the children. It was always hard the first leg of a trip, but got remarkably easier as we hiked the Bruce Trail, rambled through England’s Cotswolds or ate our way through a Tuscan hilltown. We still called home daily, but never talked much about the kids afterward.

Since Michael had worked his way through all the babysitters in our community, we were always on the lookout for some strong, level-headed young or older adult to stay with the kids during our absences. Someone looking for a challenge – our version of a “handyman’s special.”
****

I recently read entries from parents who belong to an online chat forum for parents of children with FASD. They shared their own creative approaches  to “getting away” when times are tough. sometimes known as running away from home. 

The first posting on the thread that opened the discussion was this:

“Well I may get a lot of backlash for this....but I ran away from home this weekend. One crisis too many and I was beyond overload. Called hubby told him it was his turn to parent 24/7 for the next few days. Got on hotwire. Got me a great rate in a 4 star hotel about 50 miles from home. Told everyone no call no text. I will text I'm ok. Which I did last night and this morning. Kinda nice the only noise I hear is the a/c unit. And no FB for me except this post.”

In response:

“To survive the last two years with all the ups and downs (mostly downs) with our FASD daughter, I found a friend who loves musicals and we began following our favorite musical on its US tour every three or four months. We'd book a hotel, get tickets for two or three shows a weekend and I could finally BREATHE. The cast may have thought we were stalkerish, but what they didn't know was that those weekends saved my sanity. It was expensive but my dh agreed it was worth every penny because I came back human. ;). The tour ended last fall, but we squeezed in a trip to NYC to see a few shows on Broadway this winter and next week we found a regional theatre performing our favorite musical so I'm hanging on by my fingernails for that! One week from today baby!!! People who don't live like this just think I'm spoiled. I've just learned that for my mental, physical, and spiritual health I have to get away.”

And another mum getaway tip:

“I think only we, the fetal alcohol spectrum disorder parents, know this exhaustion! And total desperation! There is an orchestra here in Burlington, Vermont, organized by two world class musicians and called ME2, whose members are made up of people with mental illness or who have it in someone close to them. They are just so excellent and their separate string orchestra is to die for. We recently went to one of their concerts called Music From the Holocaust, certainly mental health related, that will be with me for a long time.

I'm not a musician, but I feel a bond with them. I really think engaging your right brain is important in our situations. I've always loved art, although I'm not an artist, and every chance I get, I love going to exhibits and museums. We live between Boston and Montreal, so special exhibits are somewhat accessible.”

Good for you mums!

What’s YOUR secret to maintaining sanity?

Same Old, Same Old?


Michael has come far since he was diagnosed with Fetal Alcohol Syndrome when he was six. At that time, the prognosis was grim. Although the clinician at The Hospital for Sick Children was clear that early intervention could make a real difference in his life, the diagnosis was irrefutable – Michael was brain damaged. Research at the time was showing that by their adult years, many people diagnosed with FAS would be living on the streets, be on welfare, in and out of jail, and leading lives of quiet desperation.  Only time wold tell.

Our son is now 26. He lives in a group home during the week and is home with us from Friday through Sunday.  We’re happy to have a break from him during the week, and know it’s important for him to develop some independence, which he can in the the semi-independent living environment at the home.

He has become a sweet, mild-mannered young man, kind of heart.

Michael did drop out of school in Grade 9, as predicted. But last year he started a program here in Toronto at the Centre for Addiction and Mental Health (CAMH) to get his GED (high school equivalency), and goes to classes four days a week. To date, he has had no success holding a job, he has few friends, can not manage money, prefers his own company, and would never do his laundry, shower or clean his room unless forced to.

He has become an excellent woodcarver. Several of his carvings have won awards.

The dire predictions made when he was six never came true, but Michael does not function well in the world. He needs family and professional supports daily.

We love our son, always have, and appreciate the many strides he has made in his life.

But something worries me. Last week, when he was home with us, he stole $20 from my purse to buy cigarettes. This is not the first time, and I’m afraid,  this may not be the last.

We saw him with this pack of cigarettes and couldn’t figure out how he got it. We knew he had no money. When asked about it, he started to lie.  With each word, he was digging himself deeper into the proverbial hole. I walked away. I couldn’t bear hearing him making things worse, adding lying to the list of crimes.

The next day, Michael admitted that he had stole the money.  He saw how upset I was. It was obvious he felt remorse.  His eyes filled up. Unprompted, he said he was sorry. He looked miserable, went to his room and threw himself on the bed. I believe he truly was sorry.

The trouble is, it doesn’t mean that the next time Michael is desperate for something (be it cigarettes, candy, a beer...), he will be able to control his impulses.  One of the characteristics of many people with FAS is poor impulse control, not to mention poor judgement.  It’s the nature of the beast.  He doesn’t stop to think about consequences of his action.  In the heat of the moment, he doesn’t care.

That night, I went online to one of my FASD Facebook support groups. I read messages from parents talking about their children who had stole money, food, and other valuables.  Many said they locked up money and everything else hey could. They hid food. One person put food and money in the trunk of her car. Several parents said it was their duty to not to have anything around to tempt their children.  It wasn’t their fault that they stole. It was part of the FASD package.

The children of these parents were all under 10.

At 26, Michael still has impulse control problems. He smokes too much, eats too much, and would drink too much if he could. He tries to cut down on everything, but it just doesn’t seem possible for him. But I did think he had outgrown stealing. It was a real shock to us that he clearly hadn’t.

Though we understand that people with FASD have particular neurobehavioural problems, my husband and I believe we had to hold Michael accountable for his actions.
Perhaps if the consequences are meaningful enough to him, perhaps, just perhaps, he will be able to control his impulses the next time he wants to steal. We have to do something.

Our decision was to not let him come home to be with us the following two weekends after the incident. Why would we want someone in our house who steals from us, we told him. Why would we want to be with someone we couldn’t trust?

Before he could come back, we asked Michael to write a letter to us explaining what he had done wrong;  why it was wrong; why he wanted us to trust him again; and what he was going to do to earn our trust again. We hoped to encourage him to think hard about his actions and to understand that things would have to change before he would earn our trust again.

He followed through.  He wrote some very thoughtful things, but of course, he’s no dummy. He knows what we want to hear.

Michael  is home this weekend and we can see he’s on his best behaviour.  But the truth is, if the opportunity and impulse arises for him to steal again, I’m not completely sure he won’t just go for it. I’ve hidden my purse.

The Difficulties Finding a Good Support Worker or Coach

I started writing this blog in a rage. When I finished my detailed four-page (word document format) rant, I read it through and realized that’s exactly what I had done. Rant. And rants don’t necessarily make good blogs.

While it felt good for me to give a blow-by-blow explanation of why my husband and I decided we have to fire our son’s support worker today, I realized that’s about all it did: help me get something disturbing and sad out of my system and down on paper.

But, as I said, that’s all it did. Though I think dozens of people raising children with special needs would relate to my unhappy situation (if they made it through my dense writing), it wasn’t going to work for a blog. Experience tells me that more often than not, most readers’ eyes begin to glaze over when reading (or listening to!) other people’s angry missives.

So, I’m rewriting this blog entry right now and will try to stick to the salient facts. Wish me good luck.

It has always been difficult to find good support workers (or coaches) for our son with Fetal Alcohol Syndrome. When he was diagnosed with FAS at the age of six, in 1993, few professionals had heard of FAS. Many who did know about it misunderstood the condition completely (“people with FAS have no conscience”; “they’re violent”; “they can’t learn,” etc.).

So when Michael was young, we couldn’t find a support worker who had a good understanding of children with FAS or how to work with them. While we did find caring, sensitive workers, they had no specific training working with people with FAS so they often relied on therapeutic models that didn’t work, such as “Just try harder, Michael.”  Or, “You know you weren’t suppose to do that. So why did you?” Or, “You knew that 2+2= 4 last week. Why do you not know it this week?”  That kind of thing.

People who understand FAS know that many people, including our son with this neurological disorder, have poor executive functioning, bad memories and don’t necessarily understand the consequences of their action. They need external brains.

Back to the support worker. Last year, we hired Bob to work with Michael, now 24. Michael still needs help following routines of daily living and needs to improve skills which will allow him to live what is called “semi-independent living.”  Michael lives in a group home during the week and is home with us on Friday through Sundays. Michael also needs someone he can talk to.  The staff at the group home, while nice, provide minimal support.

Bob came recommended because he had worked with people with FASD before, and when we interviewed him, we were impressed with his knowledge of the disorder.

Once hired, Bob spent several hours twice a week with Michael helping him with daily routines. He took him out grocery shopping, to the library. He helped him on the public transit system and did other things to  get him out into the world. And they talked.

We thought everything was working well with Bob and Michael was content with seeing him several times a week.  Until…

Michael broke a serious rule at his group home a month ago (I don’t feel it fair to Michael to write what it was, but suffice it to say, Michael didn’t harm or affect anyone else).

Needless to say the group home workers as well as my husband and I were deeply upset about what Michael did. We met and tried to come up with appropriate consequences and reinforcements to ensure Michael understood the “wrongness” of his act and wouldn’t repeat it again.

But it’s not easy to teach someone not to do something again, even when they understand it’s wrong, when they act more on impulse rather than reason.

This is where the problem with Bob comes in. Bob decided the best way to reach/teach Michael about this issue was to berate, bully, and verbally bludgeon Michael about his misdeed. He was relentless and wouldn’t give up. He believed he had to “break Michael’s defenses down,” in order for Michael to understand the seriousness of his misconduct. He repeatedly had Michael in tears.

We didn’t know about this until Michael eventually came to us, crying, and explained what was going on. “I don’t think anyone should treat me like that.”  “He asks me questions about what I did that I can’t answer.”  “When someone is that mean to me, I dig in my heels and it makes me want to do the opposite.”  “I don’t want to work with him anymore.”  “He makes me feel bad about myself.”

You would think that would be enough for my husband and I. You’d think we would call Bob and tell him we didn’t think this approach was constructive for Michael or a way to help him learn to control his impulses better.  But we didn’t trust our instincts. Bob was a professional. He came highly recommended. Perhaps he knew something we didn’t. Perhaps we were being unnecessarily protective and defensive of our son.

So, instead, we set up a meeting with Bob for all of us to meet and decide how and if to move forward.

I’ll spare you the details of the meeting, but Bob was belittling to my husband and me (you’re too easy on Michael; you’re pretending there isn’t a problem; you’re letting Michael get away with things).  He bullied Michael when Michael tried to talk (“Speak louder.”  “You can’t just tell me you’re not going to do that again. You have to tell me how you’re going to stop yourself from doing it…”

Bingo. Time to trust my instincts. Too bad I hadn’t earlier.

This guy is a bully. Michael’s not going to learn anything from this guy. He’s going to do the opposite of what Bob says. Plus, our goal is to build Michael up, give him confidence, help him reprogram his brain in a constructive way.

As Michael said, no one should treat Michael like this.

So we’re firing Bob. One problem solved. But there’s always another.

How are we going to find someone (good) to take his place. My husband and I can do only so much. Michael’s not the only one who needs support.

Whew! I did it. The blog is now only two dense pages. Congratulations to any of my blog readers who made it through from beginning to end.

I would love to hear about any of your own experiences  (good or bad) with workers, and what you do to ensure you’ve found the right one.

Or, you might want to share experiences about a time when you did or did not trust your own instincts.

Happy New Year to you all.

FASD Listservs and Supports for Families

My son was diagnosed with Fetal Alcohol Syndrome in 1993, at the age of six. The doctors at the Hospital for Sick Children told us that Michael's brain had been damaged in his birthmother’s womb from the alcohol she drank during her pregnancy with him. 

We adopted our son when he was seven days old. Though he had ongoing health and behavioural problems ever since he was a tiny babe, we had no idea there was something physically wrong  causing the problems. The doctors at the hospital who examined him when he was born pronounced him healthy. Our family doctor, though aware of the many problems we were having, assumed Michael was just a highly energetic child who happened to have a series of health problems.

While it may be hard now to believe that people didn’t know the dangers of drinking while pregnant, that’s the way it was. Like cigarette smoking. People honestly didn’t consider smoking unhealthy until the U.S. Surgeon General spoke out about it in 1964. Doctors smoked. People smoked in restaurants, movie theaters, airplanes. You wouldn’t dream of asking someone in your home to go outside to smoke.

The same thing with alcohol and pregnancy. The general pubic, and even most doctors at the time Michael was born had no idea of the danger alcohol causes as it flows across the placenta into the womb. The first time anything about the syndrome showed up in the medical literature was 1973. For the next twenty years, not much was added to it.

Needless to say, there was little support for the families like us who had children with FAS (now referred to as Fetal Alcohol Spectrum Disorder – FASD) because so few cases were diagnosed, and general awareness of the disorder was minimal. Money and services were directed to supporting families with other issues, particularly Down Syndrome and autism.

The situation for FASD families hadn’t changed much until recently. However, slowly, governments and social service agencies have become more aware that nine children out of 1000 in Canada are born with FASD, the largest cause of mental disabilities in children. Right now, it is estimated that 300,000 Canadians (and their families), suffer from FASD.

I was delighted recently to receive an email from an FASD educator providing a list of “listserves” for people needing support regarding FASD issues. Such a list didn’t exist years ago. We parents were on our own finding help, support and services. But then FASD advocates like Teresa Kellerman, Bonnie Buxton, Brian Philcox and Diane Malbin came along and put FASD on the map. They are amongst the FASD pioneers.

There is still little financial support for struggling families, and much ignorance in the social service world about how to help individuals with FASD and their families. Alas. Yet health and social service professionals, along with the general public are becoming more aware of the dire, lifelong effects of FASD. We can only help that along with awareness will come concrete help.

In the meantime, let me share with you this excellent list of  sites that direct you to FASD support organizations and mailing lists to join for additional information. If you know of anyone who has a child with FASD or works with children or adults with the disorder, please pass it on. And to those of you with an FASD child, I wish you courage.

To any of you interested in learning more about FASD, I direct you to this excellent site.

FASD listservs 
(internet mailing lists and support links)

FASD_Canadian_link
(for persons working in the field of FASD across Canada
 & internationally - news, articles, reports, events)


http://lists.von.ca/mailman/listinfo/fasd_canadian_link

F

FASlink
(for individuals, parents, professionals who deal with FASD)


http://www.faslink.org/faslink.htm



Olderfas mail list
(support list for parents & mentors of adults with FASD)
http://www.come-over.to/Olderfas/



fasdONE
(for FASD Ontario Network of Expertise and Ontario FASD committees & coalitions)
http://list.web.net/lists/listinfo/fasd



FASDO 
(support for Ontario families with children or adults who have FASD)
http://health.groups.yahoo.com/group/fasdo